The importance of engaging communities in research

Getting help from the community to identify and address health concerns is critical to public-health researchers. That was the message of one of the sessions at the 16th Annual Breast Cancer Conference of the Cancer Prevention Institute of California (CPIC), held earlier this spring.

The session brought together researchers, clinicians, community advocates, and breast cancer patients and survivors to discuss how unmet community needs can inform research studies in what has come to be known as community-based participatory research (CBPR).

Panelists emphasized the importance of engaging community advocates as full partners when embarking on a CBPR program and identified these as key things that researchers should do to ensure success:

Obtain input from the people who are directly impacted by the issues

Establish equal footing between the researcher and the community in choosing a research topic/program

Agree on what the outcomes should be (e.g. social/policy changes)

Empower the community to take action that translates to real transformation once the research study or program is complete

While the approach needs to be customized for each study, panelists offered some examples of how one might establish or maintain the “buy-in” of a CBPR program:

Use qualitative data, such as stories from people who have been through the program, which are powerful in demonstrating the value of the study

Use an integrative approach of policy, advocacy, community outreach and engagement, as well as research to address the big issue.

Form advisory groups comprised of community members, who are part of the research program, and train them to discuss cancer education and outreach within the community.

During the session, several researchers provided examples of engaging with various communities in their work. Thu Quach, PhD, an epidemiologist with CPIC, described how fifteen years ago workers with Asian Health Services, a community health center in Oakland, kept hearing local nail salon workers say, "You know, whenever I work in nail salons I breathe a lot of these chemicals and they just don't make me feel very good." This led to Quach and other researchers looking into the problem and finding that the chemicals used in nail salons led to health ailments among workers.

And research was just one piece of an integrative approach of policy, advocacy, community outreach and engagement. While the studies were taking place, Quach explained, the center was simultaneously taking such actions as urging manufacturers of nail polishes to phase out some of the harmful chemicals and training nail salon owners on how to replace those nail polishes with safe alternatives.

Catherine Thomsen of Zero Breast Cancer described a study looking at early puberty onset and breast cancer. The researchers asked the girls who were part of the study for their opinions and ideas. What questions should be asked? How should the questions be asked? How do they want to communicate with this study? Since these prepubescent girls spent so much time on their mobile phones researchers wound up modifying their interaction around mobile technology.

Session moderator Judy Luce, MD, a clinical professor at UCSF, also shared an example from earlier in her career at San Francisco General Hospital. A health center was referring a large number of women for mammograms, but many were not showing up for their appointments. Once this health center saw how they compared to other health centers in the area, they took action by assigning a language-appropriate nurse to contact the referred w omen and make sure they knew when their appointment was, how to get there, and essentially guide them through the process. By making these changes, the clinic had the highest mammography rate in the entire system.

The panelists noted that measuring the impact of a CBPR program presents a challenge since the outcomes, such as reducing the incidence of breast cancer, of any research study may take time to unfold. But, based on these and other examples, this type of research is clearly worth the investment.

The scenario many of us learned in school is that two X chromosomes make someone female, and an X and a Y chromosome make someone male. These are simplistic ways of thinking about what is scientifically very complex.